In an era in which concerns of an autism "epidemic" top the headlines, and parents are educated by the media that children should point by their first birthdays, it is more common than ever for parents to raise developmental concerns to their pediatricians at their children's well child visits. When any developmental concerns are raised, the conversation quickly turns to the possible need for therapy and a referral to the Early Intervention program (EI). When the EI program began in the 1990s, many parents and healthcare professionals were just learning of the program: how to access it, eligibility criteria, and the available services. After 15 years, the EI program is well established in the majority of states. Healthcare providers, community agencies, and parents are aware of the program and recognize it as a critical resource for families with young children who are experiencing developmental delays. With the emphasis on early identification of developmental delays in the medical home, and the emerging data that groups of children and their families have better outcomes when identified and treated earlier, pediatricians are put on the hot seat: to identify children with developmental delays as early as possible, to refer them for evaluation, to oversee necessary medical/diagnostic evaluation, and to follow the children to ascertain that appropriate therapeutic services are in place. What's a pediatrician already crunched for time to do?
The goal of this article is to provide the physician with a "crash course" on EI that will provide information on how to manage the care of young children with developmental delays with confidence. We will review the EI law, outline the role of the pediatrician in the system, discuss issues relating to the prescribing of therapies and equipment, and briefly review some of the outcomes literature on EI.
As recently as the 1970s, children with disabilities were offered either an insufficient education or no education at all. The growth of mandatory federal education laws for children with disabilities began with the passage of PL 94-142, the Education for All Handicapped Children's Act (EHA) in 1975, which guaranteed a free, appropriate public education to each child from 3 to 21 years with a disability in every state and locality across the country.
In the 1980s, as part of the national agenda to expand educational access for all children with disabilities, and based on the momentum of PL 94-142, infants and toddlers became regarded as a separate and distinct population, in need of particular programming and services. Therefore, when EHA was amended with PL 99-457 in 1986, Congress provided incentives for states to provide programs and services to qualified children from birth and established Part H (Programs for Infants and Toddlers with Disabilities) of the law. The EHA was then renamed the Individuals with Disabilities Education Act (IDEA) in 1990. IDEA served as a major breakthrough for children with disabilities and was re-authorized by Congress in 1997. At that time, Part H was renamed Part C and dedicated only to Infants and Toddlers with Disabilities.1
Part C, or the Early Intervention program as it is often called, offers a range of services for infants and toddlers. Although Part C was written as part of IDEA, which is dedicated to educational programming and treatment, the emphasis for this younger population of infants and toddlers is clearly a developmental one. The programmatic thrust is to meet the developmental needs of the child, but it is also aimed at addressing "the needs of the family related to enhancing the child's development."2 The intent of this legislation was not only to enhance the development of the identified children, but also to minimize their need for special education in the future. A further thrust of the Part C legislation, and a clear difference in comparison to IDEA for students 3 to 21 years, is to enhance each family's capabilities in meeting the needs of their very young child with a developmental disability.
Part C requires each state to develop "a statewide comprehensive, coordinated, multidisciplinary, interagency system that provides early intervention services for infants and toddlers with disabilities and their families."2 The law requires that there be a system of follow-up for at-risk infants/ toddlers, a system of outreach to facilitate early identification of children with developmental delays (known as "child find"), and that there be clearly defined eligibility criteria. States are free to implement the law in a variety of ways. Common eligibility criteria include the following: children from birth to 3 years who have a diagnosed physical or mental condition that has a high probability of resulting in developmental delay or who are evidencing significant developmental delay in one or more of the five key developmental domains: communication, cognitive, physical (including vision and hearing), social/emotional, and adaptive.3
In all states, the EI program begins with a referral to the county agency charged with implementing and monitoring the program. In most states, there is an 800 number for such referrals, and faxed referral forms are also accepted. Next, the family is assigned a service coordinator who is charged with the responsibility of coordinating the evaluation process. A timely, comprehensive, multidisciplinary evaluation is mandated by the law and must be conducted in the family's native language, providing information about the unique needs and functioning level of the child in each of the five identified developmental domains. EI is considered a parent-driven system, and parents are recognized as the experts and decision makers for their children and as crucial members of the evaluation team. A review of the health and medical records is completed as part of the process, and any appropriate medical documentation pertaining to the child/family's ability to participate in the EI program is gathered. Based on the family's preferences, the evaluations may be conducted in the home, at an evaluation facility, or in any other location that is convenient for the family.
After the multidisciplinary evaluation has been completed, the service coordinator is responsible for scheduling an Individualized Family Service Plan (IFSP) meeting to discuss the family's strengths, priorities, and resources available to address their child's needs. As an advocate for the child/family throughout the process, the service coordinator continues to fulfill an important ongoing role. The coordinator assists in the completion of the IFSP document, which includes statements about the child's current level of functioning in the five major developmental domains, elicited from the parent, and supported by the multidisciplinary team evaluation documents. Family information, including a statement of the family's resources, priorities, and concerns related to enhancing the development of the child is also an essential part of the discussion at the IFSP meeting. Outcomes, expected to be achieved by the child and family, and the criteria, procedures, and timelines that will be used to determine the degree to which progress is being made, are developed and recorded in the plan. The specific EI services (speech therapy, special education, family counseling, etc.) and the goals expected for each service are developed and recorded, as are the frequency, intensity, and methods for delivering the services. A child's intervention program may be provided in any number of environments including the home, preschool, daycare center, etc., but the law stipulates that services should be provided in the "natural" environment, the place where the child spends most of his/her day. If parents are dissatisfied with the process or outcome of evaluation, the law assures them the right to contest the outcome or a right to a fair hearing.2
Following the IFSP meeting, the service coordinator is responsible for finding available service providers, coordinating, and monitoring the delivery of services. The service coordinator also facilitates the transition plan to preschool services, if appropriate, and coordinates any additional services needed to support the family, such as respite, transportation, and assistive technology services and providers.
An assistive technology device (hearing aid, manual or power wheelchairs, adapted toys, etc.) is defined as any item or piece of equipment "that is used to increase, maintain, or improve the functional capabilities of a child with a disability." An assistive technology service is "a service that directly assists a child with a disability in the selection, acquisition, or use of an assistive technology device."2 Both the devices and the services are available under EI, as they are for preschool and school-age children receiving special education.
ROLE OFTHE PEDIATRICIAN IN EARLY INTERVENTION
A recent policy statement by the American Academy of Pediatrics (AAP) states, "Early identification of developmental disorders is critical to the well-being of children and their families. It is an integral function of the primary care medical home and an appropriate responsibility of all pediatric health care professionals."4 Unfortunately, identifying developmental delays early in the primary care setting is not an easy task. A recent survey of AAP members found that few pediatricians had implemented an effective means for screening their patients for developmental problems, with more than 70% continuing to rely on clinical assessments and non-standardized methods.5 However, clinical assessment alone has been reported to detect less than 30% of children with developmental disabilities6 and to be generally inaccurate.7
Major obstacles cited in instituting standardized developmental screening procedures included: lack of time, lack of staff, and inadequate reimbursement.5 These obstacles are in clear contrast to surveys of 15 to 20 years ago, when pediatricians cited a lack of training in the areas of child development as a major obstacle to screening children for developmental delay.8 The AAP policy statement4 responds to these difficulties by offering a "strategy to support healthcare professionals in developing a pattern and practice of attention to development" in the identification of young children with developmental delays. The basic strategy is that developmental surveillance be incorporated into every well-child visit and that standardized developmental screening tests be administered at 9-, 18-, and 30-month visits.
Developmental surveillance refers to the process of recognizing children who may be at risk for developmental delays through obtaining a relevant developmental history, making informative observations of the child, and eliciting and attending to parental concerns.9 The literature suggests that posing simple questions to parents related to any concerns they may have about their child's development, learning, or behavior can elicit valuable information.10,11 If concerns arise during surveillance, then a screening should be undertaken either at the same visit or at an appointment scheduled soon after for that express purpose.
At the 9-, 18-, and 30-month visits, all children, even those without identified risks from surveillance, should undergo developmental screening using a standardized test. Developmental screening is the administration of a brief standardized tool that aids in the identification of children at risk for a developmental disorder. Parent-report screening instruments have multiple advantages. Many have excellent reliability and validity data.4 Most parents can fill out the forms on their own, either before a visit, or in the office waiting room. For parents who cannot fill out the forms because of language barriers or low literacy, office staff can read or translate the items for parents. The process is typically brief, taking from 2 to 15 minutes depending on the instrument and the age of the child. The instruments also can play a role in terms of anticipatory guidance. As parents answer the questions, they learn about development and can become more active partners in promoting their children's development.12 After the instrument is completed, office staff can score the measure. The physician can then interpret the screening results for the family and enter into a discussion of what should be done next if the result is concerning.
Developmental screening does not result in a diagnosis; rather it identifies areas in which a child's development differs from other children of the same age. If results of a screening are concerning, the next step is referral to the EI program and often for medical/ diagnostic evaluation, as well.
Referral to the EIP
No parent likes to hear that his or her child's development is not on track. When a parent raises a developmental concern, a discussion of a referral to the EI program is typically more welcome, because the parent has had time to think about their concern and may be more ready to proceed to the next step of intervention. When a pediatrician is recommending a referral to the EI program to a family that has not raised a developmental concern on their own, the manner in which the information is presented can make the process proceed more smoothly. When families with children with special needs were asked for suggestions regarding how pediatricians should speak to families about EI, the following were offered: be honest and speak in clear and simple language about your diagnostic concerns, be sensitive and caring about parents' feelings by listening to them, be knowledgeable about EI, and offer to become a partner with the family.13
Whether to give the parent the number to call on their own or to have your office staff initiate the referral will depend on various specifics of your practice. If parents are to call on their own, they should be provided with a pre-printed information sheet that includes basic information about the EI program including relevant telephone numbers, responses to frequently asked questions, etc., as well as the instruction to call the office should the family fail to hear from an EI service coordinator within a given timeframe.
Pediatrician's Role in the El Evaluation
The EI law requires that a review of the health and medical records be completed as part of the evaluation process. For each child participating in the EI program, a physical form with documentation of immunization status, lead level, hearing screening, or any medical condition is typically required from the pediatrician in order for the IFSP to be held. Since most pediatricians are not able to participate in the IFSPs for their patients, this document provides an opportunity for communication with the EI team regarding any medical conditions the child is known to have which may impact on his development or treatment.
As described above, in most states there are two ways that children can be considered eligible for EI services: if they are demonstrating significant developmental delays, or if they have a "diagnosed condition with a high probability of developmental delay." Premature infants weighing less than 1,000 gm at birth or with a history of grade IV intraventricular hemorrhage, or infants with various syndromes (eg, Down syndrome) are typically considered to have automatic eligibility. By providing the documentation of the diagnosed conditions, the healthcare provider can help these high-risk infants qualify for services even before significant delays are evident. Other medical conditions, such as infantile spasms or hearing impairment, may come to light in the course of the diagnostic medical evaluation. It is important that this medical information is shared with the EI program as it becomes available.
The Diagnostic Evaluation
In virtually all states, the EI evaluation is designed as an eligibility assessment to determine if the child meets the criteria for the definition of "developmental delay," thereby making him/her eligible to receive services. The evaluation mandate is not a diagnostic one. Therefore, a former premature infant with motor delays may be found to qualify for EI services on the basis of having motor delays, but a diagnosis of cerebral palsy may not be offered by this eligibility evaluation. Similarly, an eligibility evaluation may find that a child is delayed in the domains of communication and social skills, but the diagnosis of an autism spectrum disorder may not be made. It is the role of the pediatrician caring for a child with developmental delays to always oversee a diagnostic evaluation.
A diagnostic evaluation has as its goal the identification of the specific developmental disorders) affecting the child and can provide prognostic information, as well as suggest specific interventions for the child. Pediatric subspecialists, such as developmental pediatricians, child neurologists, physiatrists, psychiatrists, and audiologists, as well as early childhood professionals, such as psychologists, speech and language pathologists, physical and occupational therapists, special educators, and social workers, all may play a role on a diagnostic evaluation team. Ideally, such diagnoses are made utilizing a multidisciplinary team approach, with involvement of the primary care provider, the medical home, and the family.
l is now in place
Once the parent reports that EI services have begun, there is often a sense on the part of the pediatrician of having addressed the developmental issues of the child and mentally checking off that concern on a long to-do list. However, it is important that the pediatrician be aware and attentive to various situations while the child is receiving EI services. A lack of progress in a child despite an appropriate therapeutic program should trigger consideration of the need for additional medical evaluations. This scenario is often suggestive of the presence of specific diagnoses such as cerebral palsy, autism, hearing impairment, or a syndrome with associated mental retardation.
There is also a need to monitor that the services in place are appropriate. Although EI mandates that the child's progress toward meeting the established goals be assessed every 6 months, the developmental domains in which the child does not receive services may not be reassessed every 6 months to see if new delays are emerging. The typical scenario that may require your attention is that of a former premature infant who has been receiving PT and OT. Now, at age 1 8 months, the child is walking well and starting to run. PT and OT services may continue as put in place. If no one is looking at the child's developmental progress overall, it may not be noted that this high-risk child is experiencing communication delays and/or learning problems and that speech and language or cognitive evaluations and treatment are indicated.
There are also scenarios, places, and times of the year when a shortage of providers may result in a lack of availability of specific therapeutic services. The specific services that a child is receiving through the EI program should be elicited and reviewed at each well child visit and the appropriateness of the therapeutic plan should be considered. With parental consent, the healthcare provider may be in a position to communicate a concern or recommendation to the service coordinator.
It is also important to be aware that the bias in the direction of home-based services is not ideal for all families. There are families that are not comfortable or willing to have clinicians come to their home. The family with a history of Child Protective Services involvement, or a parent with a drug habit or mental illness may refuse home-based services. This would be a family that is at risk of falling through the EI system cracks and may need special attention. In such cases, offering the family EI services in a center-based program may be more appropriate.
Even when families are happy and willing to have their child receive services in the home, they may not be prepared for issues that may come along with this plan. Parents often describe feeling like employers for the therapists that come to the home. Reporting therapists who do not come reliably or who engage in techniques that raise questions for the parent are situations that may be difficult for a family to manage. In addition, parents who are intellectually limited or with psychiatric diagnoses may encounter particular difficulties with this role.
Lastly, for many families able to advocate for their children's needs, a parent-driven system is ideal and appropriate for taking into account the parents' concerns and priorities. There are, however, scenarios where a parentdriven system is not ideal for meeting the child's needs. Take, for example, the family that is not in agreement with a child's diagnosis of autism. A parent-driven system designed to follow the preferences of the family may be at odds with meeting the needs of the child. As an advocate for the child, the pediatrician who has a longstanding relationship with the family can play an important role in working with the family to accept appropriate services.
Prescribing therapies and equipment
It is common practice that either before or after the IFSP meeting, the pediatrician is asked to provide a prescription for physical and occupational therapies. During the course of an EI evaluation or treatment, a prescription for durable medical equipment (such as braces, Standers, wheelchairs, or augmentative speech devices, etc.) may also be requested. A Clinical Report on "Prescribing Therapy Services for Children with Motor Disabilities," issued by the AAP in 2004, outlines the role of the pediatrician in writing a prescription for therapy as including:
1. Providing an accurate diagnosis when possible;
2. Clarifying associated problems that may impact on progress or require consideration during therapy (eg, precautions due to seizures, osteopenia);
3. Specifying the child's age and the type, frequency, and duration of therapy; and
4. Designating goals.
It is suggested that the pediatrician should work with the family, child, therapists, school, diagnostic or rehabilitation team, and other medical specialists to establish realistic functional goals.14 This comprehensive role outlined for the pediatrician is in line with the goal of creating a medical home for children with special needs at the site of primary healthcare, and incorporates the pediatrician in a critical role, creating or leading an interdisciplinary team individualized to meet the needs of the child with special needs.
The question has arisen of whether pediatricians feel able to assume leadership in prescribing such therapies and durable medical equipment. A survey completed in 2000 indicated that nearly three-quarters of the pediatricians surveyed did not believe that they were adequately prepared to take an active role in prescribing therapies and durable medical equipment. A lack of specific training and physician confidence were highlighted as contributing to this lack of sense of preparedness.15
Other issues that may arise for the pediatrician who is being called upon to provide prescriptions may relate to a request for a prescription for a service that is not yet evidence-based. The policy statement addresses this concern noting, at this time, "Prescribing therapy services for children with motor disabilities clearly cannot be based entirely on sound scientific evidence."14 The current emphasis on evidence-based outcomes will hopefully over time provide a set of guidelines for pediatricians in evaluating therapeutic services for the children with special needs in their care. In the meantime, caring for children with motor disabilities and making therapeutic recommendations should be carried out within the context of an interdisciplinary team with expertise and input from a variety of relevant specialists.
Another area of concern for some pediatricians has been the liability that they assume in providing the prescription for an intervention should a complication occur. This is an area yet to be clarified.
To increase your knowledge and comfort zone: Do not go it alone.
* Connect with a "team" of medical specialists (ie, a full diagnostic developmental center or rehabilitation program, or individual developmental pediatricians, physiatrists, orthopedists, audiologists, ENTs, etc.) whom you can call upon to become involved in the care of a given child in aiding in the diagnostic evaluation, as well as therapeutic and equipment recommendations.
* Reach out to the EI evaluation team. Prescriptions should not be provided in advance of your opportunity to review the results of a multidisciplinary evaluation. The evaluations should support the need for an intervention.
* When specific therapeutic techniques are being recommended, research is required on your part to understand if at this time this is an evidencebased approach, or if evidence suggests that this approach is without merit. All information should be interpreted through the lens of a lack of evidence-based support for many of the routinely accepted interventions utilized in the care of young children with developmental delays. Again, members of an experienced intervention team, such as can be found at a developmental diagnostic center, can often shed light on such specific requests.
* Similarly, prescriptions for expensive pieces of durable medical equipment should not be provided without the input of an interdisciplinary team that includes both physicians and therapists with appropriate training and experience. For example, the ordering of a wheelchair or braces is not a simple business. The expense is often significant, and various systems may pay for only one such item throughout the course of 4 to 5 years. An experienced staff will know how to order appropriate equipment, which can be adapted to fit the changing needs of a growing child.
DOES El WORK?
There is a body of evidence demonstrating the effectiveness of early intervention for children with many developmental conditions.16"18 In many ways answering the question of "does EI work?" depends on one's definition of "work." For example, EI does not prevent cerebral palsy (CP) in children with white matter damage19 or cure Down syndrome. There are data on the impact of specific interventions such as applied behavioral analysis in autism20 and constraint induced therapy for hemiparetic CP.21 There are data suggesting that EI is helpful to children at environmental risk (low income) as well as data on children at biologic risk.22·23 The most effective EI programs begin early, are comprehensive, and involve the parents. Highly structured services are more effective than unstructured. There is evidence that children receiving EI services need fewer rehabilitative services later and that families were better able to care for their child with developmental delays.24 The emphasis on evidencebased outcome measures in the pediatric population will likely yield more data throughout the coming years.
1 . Improving Part C Early intervention: Using What We Know About Infants and Toddlers With Disabilities to Reauthorize Part C of IDEA, February 2003. http.7/zttcfn.convio. net/site/DocServer/PartC.pdf?docID=567& Addlnterest=l 161. Accessed July 12, 2007.
2. IDEA Part C Early Intervention Services To Infants, and Toddlers Under Part C of the Individuals with Disabilities Education Act, Summer-Fall 2003. http://www.nls.org/av/ faI103.htm. Accessed July 12, 2007.
3. Shackelford J. State and Jurisdictional Eligibility Definitions for Infants and Toddlers with Disabilities Under IDEA, NECTAC Notes. July 2006, No. 21, 1-16.
4. American Academy of Pediatrics Council on Children with Disabilities, Section on Developmental-Behavioral Pediatrics, Bright Futures Steering Committee, and Medical Home Initiatives for Children with Special Needs Project Advisory Committee. Identifying infants and young children with developmental disorders in the medical home: an algorithm for developmental surveillance and screening. Pediatrics. 2006;! 18(l):405-420.
5. Sand N, Silverstein M, GIascoe FP, Gupta VB, Tonniges TP, O'Connor KG. Pediatricians' reported practices regarding developmental screening: Do guidelines work? Do they help? Pediatrics. 2005;1 16(1):174-179.
6. Smith RD. The use of developmental screening tests by primary care pediatricians. J Pediatr. 197S;93(3):524-527.
7. Glascoe FP. Can clinical judgment detect children with speech-language problems? Pediatrics. 1991 ;87(3):3 17-322.
8. Melmed RD, Dolins JC. Survey of State Chapter Committees on Children with Disabilities on the Implementation of PL 99457, Part H. Elk Grove Village, ?1: American Academy of Pediatrics; 1988.
9. Dworkin PH. British and American recommendations for developmental monitoring: the role of surveillance. Pediatrics. 1989;84(6): 1000-1010.
10. GIascoe FP, Dworkin PH. The role of parents in the detection of developmental and behavioral problems. Pediatrics. 1995;95(6):829-836.
11. GIascoe FP. Using parents 'concerns to detect and address developmental and behavioral problems. J Soc Paediatr Nurs.
1 2. Pinto-Martin JA, Dunkle M, Earls M, Fliedner D, Landes C. Developmental stages of developmental screening: steps to implementation of a successful program. Am J Public Health, 2005;95(1 1):1928-1932.
13. Solomon R. Pediatricians and early intervention: Everything you need to know but are too busy to ask. Inf Young Children. 1995;7(3):38-51.
14. Michaud LJ and the American Academy of Pediatrics Committee on Children with Disabilities. Prescribing therapy services for children with motor disabilities. Pediatrics. 2004; 113(6): 1836-1838.
15. Sneed RC, May WL, Stencel CS. Training of pediatricians in care of physical disabilities in children with special health needs: results of a two-state survey of practicing pediatricians and national resident training programs. Pediatrics. 2000;105(3 Pt 1):554-561.
16. Guralnick MJ. The Effectiveness of Early Intervention. Baltimore, MD: PF Brooks Publishing; 1997.
17. Bennett FC, Guralnick MJ. Effectiveness of developmental intervention in the first five years of life. Pediatric Clin North Am. 1991;38(6):1513-1528.
18. McCarton CM, Brooks-Gunn J, Wallace IF, et al. Results at age 8 years of early intervention for low-birth weight premature infants: the Infant Health and Development Program. JAMA. 1997;277(2):126-132.
19. Palmer FB, Shapiro BK, Wachtel RC, et al. The effects of physical therapy on cerebral palsy: a controlled trial in infants with spastic diplegia. N. Engl J Med. 1988;318(13):803-808.
20. Lovaas OL Behavioral treatment and normal educational and intellectual functioning in young autistic children. J Consult Clin Psychol. 1987;55(l):3-9.
21. Naylor CE, Bower E. Modified constraintinduced movement therapy for young children with hemiplegic cerebral palsy: a pilot study. Dev Med Child Neurol. 2005;47(6):365-369.
22. Shonkoff J, Hauser-Cram P. Early Intervention for disabled infants and their families: a quantitative analysis. Pediatrics. 1987;80(5):650-658.
23. McCormick MC, Brooks-Gunn J, Buka SL, et al. Early intervention in low birth weight premature infants: results at 18 years of age for the Infant Health and Development Program. Pediatrics. 2006;117(3):771-780.
24. Bailey DB, Hebbeler K, Spiker D, Scarborough A, Mallik S, Nelson L. Thirty-six month outcomes for families of children who have disabilities and participated in Early Intervention. Pediatrics. 2005; 116(6): 1346-1352.